Avastin and Bucket List Update: Beers with the Bus........Check!

Hello Everyone:

Jerome Bettis and Jen on the set of The Jerome Bettis Show

I will get to the Jerome Bettis story and bucket list item soon.  First a medical update.

 Some of you may have been paying attention to the news lately and heard that the FDA is revoking “Avastin” from the market. This is one of the drugs that I am taking and is not very good news although I found an article dated December 28, 2010 that the manufacturer, Genentech, is requesting a hearing with the FDA before anything takes effect. The next 5 paragraphs are completely plagiarized. I cut and paste a couple of articles together instead of reinventing the wheel.

The U.S. Food and Drug Administration did something highly unusual on Dec. 16: It revoked its previously granted approval for using a drug called Avastin to treat late-stage metastatic breast cancer. Avastin reduces blood flow to tumors. This allows it to halt the spread of breast cancer in some patients. In one clinical trial, 52 percent of Avastin users saw their tumors stop growing or spreading to other parts of their bodies. In most other breast cancer patients, Avastin acts as a pause button, sparing women from deteriorating further – at least temporarily. On average, Avastin can extend patients' lives by four to five months. However, some "super-responders" react especially well and enjoy unexpected years of additional life. (This is my plan)

The FDA has started the process of removing the breast cancer indication for bevacizumab (Avastin, by Genentech), saying the drug is too toxic and confers no survival benefit for women with HER2-negative metastatic breast cancer (MBC). The drug has been shown to improve progression-free survival (PFS).

The FDA’s decision was based on four clinical trials: E2100, AVADO, and RIBBON-1, which studied bevacizumab in the first-line treatment of MBC, and AVF 2119g, which studied it as second-line treatment in this setting. “Today’s announcement is the first step in a process and will not have immediate impact on use of Avastin to treat breast cancer or the drug’s availability,” Janet Woodcock, MD, director of the FDA’s Center for Drug Evaluation and Research, said in a press briefing. “For patients, this means no disruption in treatment. Their access to Avastin will not be affected.” She added that oncologists currently treating patients with bevacizumab should use their judgment in deciding whether to continue with the drug or explore other treatment options.

Dr. Woodcock emphasized that the FDA’s decision did not take into account the cost of bevacizumab, which is estimated at about $100,000 per year per patient. “Reimbursement is a decision that is made by insurance providers which often use different criteria from those used by the FDA when we determine that a drug is safe and effective for marketing,” she said. “At this time, the CMS [Centers Medicare & Medicaid Services] will not be making any changes to its reimbursement policy for Avastin and is waiting until the resolution of this process before deciding whether to make any changes.”

Meanwhile, as the FDA was announcing its decision, the European Medicines Agency (EMA) declared that bevacizumab in combination with paclitaxel remained a valuable treatment option for women with MBC, claiming that the benefits of the combination outweighed the risks. (I’m not taking paclitaxel at this time)

What does this mean for me? Well everything is still up in the air as you can see. Dr. Bowers is keeping a close watch on the situation and will make whatever recommendation is necessary at that time. As of now, I received a dose of Avastin on December 20th  and will continue to do so until I hear differently. J

Onto good news now. The bucket list is coming along very nicely. I’ve crossed off 3 items in the last 2 months and they were a blast!

Bucket List #16 Turkey Bingo!

Nancie and Jen with winning cards.

Yup, you heard me right. On November 19th we met our friends Nancie and Terry and what seemed like the entire City of Carver for Turkey Bingo at City Hall for a fundraiser for the Carver Blackhawks. Her family and friends are WONDERFUL and they welcomed JR and me with open arms. We had a blast! We started the evening with cocktails, shocker, down the street and headed up to City Hall shortly thereafter. The place was packed and the games were fast and furious. 41 games in total, lots of turkeys to win. Little did I know that mixed into this Turkey Bingo was a meat raffle. Don’t panic everyone, I’m not crossing meat raffle off the list because this was technically “turkey bingo” and NOT technically a meat raffle.

In between games there were lots of prizes to win too. If my memory serves me correctly, Nancie’s gang and JR and I walked out of there with a City of Carver baseball hat, City of Carver sweat shirt, 3 gift certificates for bars down the street, around $60 in cash, a pack of steaks, a ham and 5 turkeys. We rocked at Bingo; I don’t want to talk about it. After Turkey Bingo we did a little more bar hopping with Nancie and Terry. What a fun night! Thank you Nancie, Terry and the City of Carver!

Bucket List #31 – Learn to make gravy

I had LOTS of offers to learn how to make gravy, where have you people been? Kari Mitchell helped set this one up for me. I took up the offer from the folks at Open Arms of Minnesota. They are one of the recipients from The Breast Cancer Ride that The Tittsburgh Wheelers participated in this summer. For those of you who don’t know who they are, they provide nutritious meals to cancer patients and their families during treatment. They are really a top notch organization.

Gravy Lessons at Open Arms of Minnesota

On November 24th I went over to their new building to learn how to make gravy. I was met by their executive chef Nick Collins who got me prepped with an apron and hairnet, no one looks good in these by the way, and after a thorough hand washing I went to the biggest kitchen I’ve ever been in. It was there that I met Austin, who is the greatest gravy making instructor in the world. I learned so much that day! It was better than watching Food Network and I had a great time getting to know Austin and learning how to make gravy. I’m the gravy master. Bonus, I brought some home for our Thanksgiving dinner the next day. It was delicious. Thank you Nick, Austin and Open Arms of Minnesota!

Beers with the Bus!

The Bus and Jen in the Owners Suite of Jerome Bettis Grill 36

Last but definitely not least, Bucket List #37 should be Bucket List #36, and I call myself a Steeler fan. Have a beer with Jerome Bettis. I swear you cannot make this one up. As it turns out several of you reached out to Jerome Bettis for this one, thank you very much. But, his people responded to our friend Jeff Wille in Colorado. That must have been some letter you wrote Jeff, I cannot thank you enough for setting this one up.

As it turns out Jerome Bettis is in Pittsburgh every weekend of a home game to tape “The Jerome Bettis Show” at one of the local TV stations, WPXI, and after the show he visits his bar, “The Jerome Bettis Grille 36”. So we flew out to Pittsburgh the weekend of December 10th to meet the Bus. How cool is that?

Jen on the set of The Jerome Bettis Show

JR and I first were invited to the station to watch a taping of the show. We showed up at 2:00 pm at the station where we were taken on a tour by some of the local talent and station manager. There were a couple other groups there to watch the show too. There was a group of kids from a local college and a group of police officers who were there to get a signature on a “corn toss” game board to raise money for one of the daughter’s of a fellow officer, she’s 19 and was diagnosed with ovarian cancer. Heart breaking.

When we went into the studio we were told to sit in specific seats to get the best view of the show and I was one of the first brought up to get my picture taken with Jerome. He’s HUGE! After Jerome had his picture taken with the remaining audience members we were taken to the green room to hang with him for about 30 minutes while he changed into street clothes and signed a bunch of things. The rest of the audience went to a conference room to wait for him. We’re so cool.

Gifts from The Bus and the staff of Jerome Bettis Grill 36

 After the station we went to his restaurant next to Heinz Field. When we got there we asked for the manager Mike and he escorted us to the owner’s suite, a.k.a. man land. This room was very cool, leather couches, tv’s, personal wait staff and a view out into the bar. Mike had some things there for me, a signed Terrible Towel, a scarf, t-shirt and a glass. JR and I were there about 30 minutes with Mike before Jerome and his friend Cliff Stroud joined us. Cliff is a former teammate from Notre Dame who now lives in Pittsburgh.

Beers with the Bus........Check!

We ordered some drinks and food and chatted about everything but football. We spent about 2 ½ hours with Jerome and Cliff and had a great time. The coolest thing about meeting Jerome Bettis was he’s even nicer than I imagined. I know that meeting your hero’s can sometimes be a huge disappointment, in Jerome’s case it was the exact opposite. That he would say yes to having a beer with someone he didn’t know because they had it on their bucket list is still unbelievable to me. And every time I think about our visit, it makes me smile. What a great day. Thank you Jerome!

To everyone who has helped me, thank you from the bottom of my heart. I look forward to crossing off a whole lot more with you all in 2011! I hope this note finds you all well and that you had a blessed Holiday Season and a safe and Happy New Year!

Love to you all,

Jen

PET Scans and Bucket Lists

Hi Everyone,

October 8, 2010 is my 4 year anniversary of my original diagnosis. I’m pretty tickled to still be here 4 years later so today is a very good day. I thought I would share a couple of things with you, first an update on my health.

3 weeks ago I had Avastin treatment and they drew my CA 27.29 number again, that’s the tumor marker test. It increased to a 49 which takes me outside the normal range again. I’ve also had a significant increase in pain in my knees, hips and my entire spine. And the pain has come on fast and furious, enough so that I started taking the elevator up the one floor at work. My oncologist, Dr Bowers, recommended another PET CT scan since it’s been about 6 months since my last one and wanted to see what was going on. I had the test on Thursday and Friday morning we sat down with Dr. Bodeau, the radiologist, to review the scans.

He started with the soft tissue. Good news, there is still NO cancer in any of my soft tissues. Yeah! That makes me very happy. Onto the bones now. From an untrained eye, mine, when I looked at the scans everything looked way brighter with more activity. To someone who knows what they are looking at, Dr. Bodeau, the brightness is because they added contrast to the test and I didn’t have contrast on the last PET. So he zeroed in on known tumor locations, L3 and L5 and looked at the “SUV #’s”. SUV’s are “Standardized Uptake Values” and measure the brightness values of “hot spots”. The scale range is from zero to 15, zero being no uptake and 15 is the maximum uptake. Most cancers are above a 3 on this scale and mine are no different.

So Dr. Bodeau is going back and forth on the SUV’s of the tumors and everything that is coming out of his mouth sounds positive. Not what JR and I are expecting to hear. We’re so used to hearing “well it looks like its spread to this location blah, blah, blah, bad news, bad news, bad news” that we aren’t even hearing anything positive anymore. We need to cut that out because as it turns out, my “metastatic activity has been reduced by 20 – 35%”. This treatment path is working. Yeah again!

JR and I walked out of the Dr’s office like Rick Moranis in Ghost Busters after the building blew up; kind of dazed, and we had no idea how to react to good news. It really didn’t hit us for about an hour after our meeting what we’d heard. If I didn’t think I’d throw my back out I probably would have popped off a couple of cartwheels in celebration. We’ve been celebrating ever since.  Don't get me wrong, we still understand I am a stage four cancer survivor, but we will take all the good news and positive progress we get!

So that brings me to my bucket list. Lots of people want to share in my bucket list adventures and so I am going to put them out there for everyone to see. If you want to participate in or help me knock some of these off the list, let’s do it! I’m also looking to add onto the list in case I get close to crossing these all off. Here we go:

These are Bucket List items already done or in progress:

Trip to Italy – Spring of 2010 – trip of a lifetime! 

Venice in Springtime

Glass Blowing class – taking classes right now, so far I’ve made 2 clear paperweights.

Glass blowing in Italy.  My Classes are in Minneapolis

Learn to make Beef Wellington for JR – Done – it kicked ass too

Mt. Rushmore, Yellowstone and Jackson Hole with Mom, Robert and Aunt Kathy – went fall of ’09. It was great!

Little Aunt Kathy, Robert, Me, Mom near the Tetons in Jackson Wyoming (J.R. behind camera)

Sky Dive Solo 

Freefall

Chute Opening

Looking for a soft landing

Skydive Solo.  Check!

Learn how to play the guitar, specifically “You Are my Sunshine”. JR is teaching me this one now, I just have to practice. JR said I can’t cross this one off until I sing it for you around the fire pit. You should probably start drinking now.

Ski Jackson Hole – substituted this one for a trip to Aspen with Dad this past spring.

Dad and Me in Aspen - Spring 2010

Take Helicopter flying lessons–Done on September 25th- It was awesome!

Flying above Lake Minnetonka

Learning to hover

Hot Air Balloon Ride - We did this October 7 after work in Stillwater.  It was fantastic and a perfectly beautiful fall day. I highly recommend that you do this too.  Thanks Aamodt's!

Flying over J.R.'s hometown of Stillwater

J.R. and Me above Stillwater and the St. Croix River

Just above the oldest working lift bridge of it's kind in the Country.  The water is high from Fall rain.

St. Croix River Fall 2010

Visit Minnehaha Falls – I’ve lived here for 17 years and it’s 10 minutes from my office. I have wanted to see it many times but never got over there. I thought this was a major crime to live here and not see it and have recently found out lots of people here haven’t seen it either. We saw Minnehaha Falls on October 11 which was a beautiful warm Fall day.

Minnehaha Falls October 2010

Bucket List Items Remaining in no particular order

1. Scuba Dive the Great Barrier Reef – John & Amy Holmes want to go with us. This has been on my list since I was in high school and one of the higher priorities on my list.
2. African Safari – This has also been on my list since high school and also a top priority.
3. Paint Off with JR- We’re both competitive and we have this spot above our fireplace that needs a picture, we keep bragging that ours would be better than the other persons, neither of us know how to paint. (Comment from guest author J.R. - Jen is very artistic and unless Ray Charles is the judge this will be the easiest win of her life!)
4. Drive a ’68 or ’69 Camaro – I used to want to own one of these, now I just want to drive the damn thing for a weekend. Believe it or not, this is harder than you think to do here in MN.
5. Alaskan Cruise- I’d like to cross this one off next summer.
6. Santa Fe, NM – Kerry and Bev
7. Ski Jackson Hole- yes, I did substitute Aspen for this and damn it, now I want to ski Jackson Hole too.
8. White Water Raft the Grand Canyon – I don’t need to camp out for 7-14 days like all the brochures say, I just want to go for a day, is that so hard?
9. Visit NFL Hall of Fame – I love my Steelers!
10. Take Dad and Roseann to Lake Vermillion
11. Go to Napa Valley
12. Scuba Dive a Wreck with Laz – I don’t care where it is, except if it’s in a lake, where’s the fun in that? Somewhere warm Laz!
13. Go snowmobiling on Lake Vermillion with Bob and Mary Michels – This past summer I was telling Bob and Mary all the ways that I knew I wasn’t going to die. I won’t fall through the ice driving in a truck or snow mobile on a frozen lake, I won’t get attacked by a bear, an alligator, a mountain lion or get swallowed whole by a big python. And the reason none of these things will ever happen to me is that I won’t be in any of these places to begin with. So Bob proceeds to tell me how safe snowmobiling is in the winter, blah blah blah, and after several cocktails, talked me into doing it this winter. That ice had better be 3 feet thick Bob, otherwise I might have a stroke.
14. Ice Fish –Can’t think of anything stupider than ice fishing. Freezing your butt off on a frozen lake with a fishing pole that’s 18” long. Who came up with this one? His wife must have been extremely ugly or he was VERY hungry. But, if I’m going to be on the lake on a snow mobile any way, I might as well get in a little ice fishing and enjoy a cocktail while I do it, because everyone has told me it’s not about the fishing, it’s about the drinking. People in MN are crazy.
15. Go to a meat raffle. – Everyone reading this who do NOT live in MN, let me tell you what this is. Apparently we go to a dive bar, OK I’m in for that, those are fun, we buy raffle tickets, OK I’m in, again I’m competitive, and we win…..MEAT! What kind of meat you ask? Apparently you can win all kinds of meat. Bacon, roasts, steaks, hot dogs, I guess you could win venison etc. If it’s meat, you can win it. When I first heard about a meat raffle I was kind of appalled by it. But the fun factor has taken over and now I’d like to get a gang together and head out to our closest meat raffle, coolers and ice ready and let’ win some meat!
16. Turkey Bingo with Nancie Pass. – Yup, you guessed it, same as a meat raffle only you win turkeys right before Thanksgiving. Hopefully they aren’t still alive. I like bingo, I like turkey, I like my friend Nancie. Sounds like a great day to me!
17. Mediterranean Cruise- This should be higher on my list; I’ve always wanted to go to Greece and Italy and thought maybe this would be the only way I’d get to see both. Now that I’ve been on cruises too, I’ve got to see the color of the water in the Mediterranean.
18. Grace Land – got to visit Elvis! 
19. Sedona- My sister Sue told me it’s one of the most beautiful places she’s been so now I have to go check it out for myself.
20. Egypt – I’d like to see the pyramids and the sphinx.
21. Visit the Redwood Forest – I want to drive through one of those big trees.
22. Hang Glide – When we were in Jackson Hole last fall we saw people doing this, I should have done it. Then I saw people doing it when I was in Aspen this spring. I should have done it then too.  Someday soon.
23. Ski Cortina, Italy – Dad has been talking about how great skiing is here for years. I gotta go.
24. Dog Sled Ride
25. Visit to Montreal
26. See the play “Our Town”
27. Ice Skate at Rockefeller Center
28. Train Ride through the mountains – US or Canada – don’t care which
29. Eagle watching in Wabasha, MN – there is a spot on the river where the ice doesn’t close up and dozens of bald eagles come to hunt and mate in the spring- it’s supposed to be really cool.
30. Visit a Volcano
31. Learn how to make gravy
32. Throw pottery with Tara – like glass blowing, I’ve always wanted to throw clay
33. Go to Germany during Oktoberfest
34. Fly in a Bi Plane – I’ve always wanted to wear the little leather hat and goggles and fly in an open cockpit.
35. Fly in a P51Mustang WWII plane – this plane is a total bad ass, end of story.
36. Meet Robert Plant – I’d like to do more than meet Robert Plant but this would be a good start
37. Have a beer with Jerome Bettis – he has one of those faces and looks like he’d be a good guy to have a beer with.
38. See an opera in Verona, Italy in the Roman Coliseum.
39. See Ava and Joey graduate from high school
40. Hold my grandchildren

Minneapolis 3-Day 60 mile Wrap Up

Hi Everyone,

We just finished up another fantastic event. August 20-22, Team Tittsburgh took on 60 miles of walking through the Twin Cities and won! The weather was mostly cooperative and we had a great time together. Team Tittsburgh had 11 walkers this year, Nicky, Stephanie, Mary, Joanne, Maggie, Cathy, Bev, Kerry, Paula and me and JR, Zach and Chris were our team gophers. What a good looking team!

Day 1:

Friday was a little moist, a little drizzle with a shower in the afternoon. All in all the temperature wasn’t too bad. We got back to camp early enough to have the Rosemount high school football team help us get our hot pink tents up. We love them! After some much needed showers and food, we enjoyed some camp entertainment, karaoke, and collected our mail from you all. Thank you! Fortunately lights out is around 9PM so we headed back to our tents and crashed hard. 

Mary and Joanne pushed themselves too hard on day 1. Joanne came into the event with a torn meniscus and made it worse, and Mary reinjured her stress fracture in her foot from the year before. Joanne was red carded and sent home, Mary begged and pleaded to NOT get red carded and that worked but she also had to go home for the night.

They actually were the lucky ones since it was really warm that night. 3 of us ended up with tents to ourselves, Maggie, Paula and I were only children, so that was quite nice. As it turned out, Nicky and Steph’s mattress would not stay blown up and neither would Crea and Cath’s. Night one sounds pretty rough doesn’t it?

Day 2:

We got up before the crack of dawn because the weather was calling for heat and humidity so we wanted to get walking as soon as possible. 6:30 was the earliest we could go, and we were walking by then. The weather was really good; it stayed cool, over cast and a little moist. All in all it was a good day.

Joanne and Mary came back in the morning and the Dr. “un-red tagged” Joanne because she had her brace and Mary had her boot to walk in so they let her stay too.  Team Tittsburgh was back on track!

For those of you who have not witnessed an event like this, let me describe what it’s like for walkers. All along the route are people cheering. Some are just sitting in lawn chairs outside of their homes. A lot of them decorate their houses or yards to support us. Kids are passing out candy or popsicles, some pass out beaded bracelets and necklaces they’ve made for us. Random families will be sitting on the side of the road with a truck load of bottled water to pass out to the walkers, music blaring. There are so many signs you can’t read them all. People drive by and honk their horns, as we cross bridges over highways, the truckers blast their horns for us. The cheer stations are packed with people; the fire houses we walk past have their trucks and fire fighters clapping and cheering and set up little spray stations if we want to walk through them to cool off. People dress up so we can stop along the route and get pictures taken with them. Cheerleading teams greet us at pit stops and have “boob” cheers they’ve made up. People dress their dogs in pink outfits. There is a group of bikers who wear pink and grey camouflage shirts with pink bras on their heads and follow the walkers around all weekend on their Harleys.

 

 And then there is Jody’s Couch. Jody lost her battle with breast cancer some years ago, but when she was still living and going through treatment, the only place she was truly comfortable was on her couch. This really is a comfortable couch. Her brother in law still has that couch and he brings it out to every Twin City 3-day event. He moves it from place to place throughout the route so walkers can have their pictures taken, have a rest and hear a story about a courageous young woman who lost her battle with breast cancer.

Family members and friends go ahead of the walkers on the route and write encouraging messages on the sidewalks in chalk. There are so many more examples of support that I can’t possibly write them all here. And every single person we pass thanks us for walking. It’s an amazing experience and keeps us moving our feet when we really have very little energy left. 

By the time I had gotten to the last cheer station on day 2, 18 miles in, I still had 5 miles left to walk. It was really hot by now, I was running out of energy and my back was hurting. We ran into one of the gals on our list that has been fighting breast cancer as long as I have and recently had brain surgery to remove a tumor that spread to her brain. She was very tired and weak; she had been waiting for us for 4 hours and was ready to go home. And who could blame her? Bethany has been my inspiration. I’d like to tell you that was the motivation I needed to finish those last 5 miles. Could I have done it? Yes, I could have. But I decided to rest my back and enjoy a cocktail with JR and friends at the Chalet across the street. It was the best Bloody Mary I’ve ever had in my life and I really needed the break. I think Bethany would approve.

My sneaky little team mates have been petitioning the 3-day for over a month to have me speak at camp this year. Out of the 270 survivors, they chose me to speak on Saturday night, which was a great honor. I had JR bring me home to get ready; I really wanted some dry clothes, dry hair and makeup for the talk.  JR and Chris brought me back to camp and stayed so they could experience camp life and watch my speech.

The temperature was nice by this time, cool and breezy and dinner was pleasant. I got up to do my speech at about 7:45. The time allotted was 3 minutes. On a good day I couldn’t tell my story in 3 minutes but I did get it down to 5. The speech went well, it was 9 minutes long, I hadn’t taken into account all the places applause could break out. But I got through it and it was good.  After the speech, it was time to dance! They had a dance party for about an hour and it was lights out. 

All our tent mates were back that night and Team Tittsburgh crashed hard that night too.

(Guest Author J.R. Says:  When Jen says "camp", it is really a small tent city with stores, a large medical center, Dinner / Entertainment area and of course all the pink tents.  

Jen's speech was amazing. Those of you who regularly read Jen's blog know the medical detail Jen chooses as she shares her story, and have laughed and cried along with her anecdotes.  Jen basically captured the spirit of her blog in a nine minute speech.  At the end of her speech with a strong voice and with much conviction she looked 3,500 listeners in the eye and announced; ".......Cancer is strong but so am I.  Someday cancer may take my body, but I absolutely refuse to give it my life.  I have a life worth living.  My name is Jen Anderson and I walk because everyone deserves a lifetime."  

I am so proud of Jen. Most of you get a part of Jen through friendship, a blog update, work, or family.  I am lucky and blessed to have Jen in my life every day.)

Day 3:

17.3 miles to go! Most of us started out together because we were in pretty good shape and could keep pace. Mary decided not to push it and only walk the last 5 miles (her foot was really bothering her). Joanne should have done the same but because she’s stubborn as hell, she kept walking with a bad knee the size of a small watermelon. Joanne and Cath got a late start because Cath’s feet were blisters with feet attached and she was still in medical when we left at 7:00 am.

Paula and Bev were making quick work of things and pulled ahead of the rest of us and was just cooking along! Steph, Nicky, Crea, Maggie and I were moving along at a good pace. Kerry’s little legs were trying to keep up but she fell behind for a while. At lunch (10 miles) we all caught up with each other. My back was killing me again but I had good energy otherwise. After lunch I decided to jump in the truck with JR, rest my back for the next 4 miles and hook up with the girls at the last cheer station and walk the last 3 miles in. 

Mary and I met up and went on our way since she’s a gimp in her boot and we figured the others would catch up to us. The last 3 miles were great! Looking out at St Paul and getting cheered in, amazing. Fortunately for Team Tittsburgh there is a bar less than a mile away from the state capital who loves pouring cocktails for walkers. Hard to believe I know. As it turns out, lots of walkers know where this place is and we hooked up with many fun teams. The bikers were there too!

 We have to be into the closing ceremony area by 4 pm so we had about 90 minutes to spend at the bar. As we headed out, Joanne and Cathy were trucking along with the most amount of determination I have ever seen. Team Tittsburgh was back together again with our support team and we finished the walk crossing over into victory lane together.

While we were having team pictures taken, one of the local news stations took an interest in us and interviewed me for the evening news. That was lots of fun. If you would like to see the interview, please click in the link here:

http://www.myfoxtwincities.com/dpp/news/twin-cities-3-day-walk-for-the-cure-raises-6-million-aug-22-2010

Closing ceremony was really emotional and very well done. I was happy that I didn’t have to go into the survivor circle by myself, Bev who is also a survivor went in with me. After the ceremony we went to Mancini’s for a delicious steak dinner and champagne toast. A great ending to a great weekend.

Out of the 11 walkers on Team Tittsburgh, 7 made it all 60 miles. Nicky, Stephanie, Maggie, Crea, Bev, Paula and Cath. Everyone was a rock star this weekend but I would like to award Cath the MVP of the team. If you knew what she physically did to herself to get all 60 miles walked, you’d be sending her co- pay money and gift certificates for a masseuse and pedicure. Mary, Kerry, Joanne and I did not make all 60 miles but we managed 40+ miles each.

Team Tittsburgh rose close to $27,000 and donations are still coming in.  The Susan G Komen for the Cure event raised $6.2 million dollars this weekend! Thank you to everyone who contributed to the cause, we could not have done it without you. Thank you to my team, I am honored that you walked with me and called yourself Team Tittsburgh!

Lastly, I got my tumor markers back last Tuesday and I am pleased to tell you that my markers are in the normal range two months in a row. Yeah!

Thank you again for your love and support, I really appreciate it. Have a great day!

Love to you all,

Jen

Hartford Breast Cancer Ride

Hi Everyone,

A couple of things. First, good news, my latest tumor marker test results have come back down to a 38, which is just a couple of points above the high side of normal again. Yeah! Dr. Bowers is very pleased so we’re going to keep with this treatment path.

 

Second, The Tittsburgh Wheelers completed our two day, 110 mile bike ride the weekend of August 7-8. We had a riding team of 10, a crewing team of 12 and had plenty of support once we got to the hotel/casino for day one camp.  And when I say camp, I mean a comfy king size be in the hotel. All in all I think we had about 30 people together this weekend. The weather was our biggest challenge, day one it rained, day two the heat and humidity was off the charts.

I will admit that I was the “weak tit” on the team, pun intended. When we got to the hotel/casino and cleaned up, we enjoyed some adult beverages, dinner, war stories and a great night of entertainment with the other riders, crews and supporters. 

The Tittsburgh Wheelers raised over $10,000 for Open Arms of Minnesota and Susan G. Komen for the Cure MN Affiliate charities. I am so proud of our team and what they accomplished this past summer and weekend. Thank you Tittsburgh Wheelers! 

And a big thank you to those who contributed to our team financially, we could not have done this without your support. 

For those who would like more detail about our experience on the ride, please read on. 

Day One: Mall of America to Treasure Island in Red Wing. Total miles 50 plus a 35 mile extension loop. 

We all got to the parking lot at about the same time. Day one was “decorate your helmet day” so decorating was taking place in the lot. Guys in pink tiaras are my favorite! The opening ceremony was really nice; A little fun, a little emotion, a lot of inspiration. We got started about 8:15 and headed out into a light rain. I think most riders appreciated the temperature.

(Mike, Jim & Sue, Mikes daughter Elle Edberg at Opening Ceremonies

We call them the Drafting Edbergs!)

I was struggling from the get go because about 3 miles into the ride we came upon a long and steady hill. You know what the best part of being on a team is? The help you get from teammates. Sue Edberg fixed my chain that popped off and Jeff Willie stayed with me for the rest of the day and helped me make it mile after mile. 

John Knievel, co worker and teammate, hooked up with another rider that was more in his “fitness and riding capability”. He just completed Colorado’s Triple Bi Pass ride a few weeks prior to our ride so he was more than qualified to be a Wheeler. Had he not taken the 35 mile extension loop after the first 50 miles, (yes, I’ve already recommended a psych evaluation to HR) he and his riding partner would have been the first and second riders to get to Treasure Island.  Way to go John!

The Edberg’s, Jim, Sue, Mike and Elle, were keeping pace ahead of the rest of us.  They had the whole Edberg Team Drafting thing going. Jim had a problem with his bike chain on the last leg which prevented him from getting all 50 miles in the order they were intended on the first day. But after he got the chain fixed at the final destination, he turned back around, met up with his family and they all rode in together. We love the Edberg’s!

Speaking of family, Jeff Willie and his sister Pam Carlson, long time friends of J.R.’s, came in from Denver CO and Alexandria MN to ride with us. When Jeff saw me struggling on the first leg, he slowed down his pace and stuck with me. They are both qualified to ride with Knievel but stayed with the slow pokes instead. Thank you Jeff and Pam! I really needed that!

The rest of the day, Jeff, Pam, J.R., our neighbor Denise (amazing woman!) and I were together. I really had a great time with everyone. By Pit stop 3 I had my fill, my neck was starting to hurt and I decided to get into the sweep van to the last stop and cheer in the gang. We love Sweep Van 7! Everyone made the first 50 miles on day one but me. I’m OK with that. 

We got checked into the hotel casino, had some lunch, napped and got cleaned up. Before dinner we managed to have ourselves “Happy Hour with the Edberg’s”, and hooked up with some of our illustrious crewmates who manned Pit stop 1, the best pit stop! Sitting around with friends and family swapping war stories is one of my all time favorite things to do in this world. They always make me laugh. Then we headed down for dinner, presentations and entertainment. 

Kari Mitchell, friend and Executive Director of the ride, asked me to speak at camp. She wanted me to tell my story and told me that I’d go on right before the comedians. Oh no! I think all in all the speech went well and the night in general was a huge success. Nicky and Zach made the trip down to Red Wing to support me during the speech and support the Tittsburgh Wheelers, thank you so much. Nicky, you’re my favorite.

Day Two: Bike back to Mall of America. Total miles 60. 

Day two was brutal to say the least. The temperature got up to 95 with a heat index of 109. Whew! But at least when we left camp we had a 2 mile hill to climb for our first leg of the ride….Denise and I met the team at Pit stop 1. She had a knee problem and needed some medical attention; I have no excuse other than I didn’t want to go up that hill. When we met up with the gang they said the hill was “challenging”, the ride down was super fun. We should have had the van drop us at the top of the hill.

The next leg was pretty easy; I believe it’s an old train track route. We were pretty much all together through that leg and that was really fun. The temperature was climbing and we knew the Tittsburgh Wheeler crew was the next stop. I wanted to spend as much time with them as I could so J.R. and I jumped into the sweep van to Pit 3.

Pit 3 had a carnival theme with games and music and everyone was all dressed in pink. This was the best pit stop yet. They even had Twinkies! When the Wheelers got to Pit 3 the heat and humidity was off the charts. Sue came in and was trying to cool off but was seeing purple spots and shaking. Not good. At this point I was more concerned for my friends’ health and well being than I was in anyone finishing the ride; it was really unbearable out there. We started to line up sweep vans to get us to lunch. 

 (Mike and Jim Edberg cooling off by pouring water over their heads)

Next thing I know, Mike, Jeff, Pam and Denise all started to get ready to ride. I told Mike that I didn’t want any of them to get sick riding and his response to me was “Yeah, but I don’t want you to have cancer any more either, so we’re going”.  I love my friends. And off they went. 

J.R., Jim, Elle, Sue and I met up with the gang at Pit 4 and you could tell that last leg was a killer. Everyone was looking pretty beat up and tired and I really thought that everyone was done. Thankfully Jeff’s experience as ski patrol and a veteran biker came in handy and he got the team back in shape quickly. One more leg to go and the temperature was still rising. I was dying just standing in that heat; I knew I wasn’t getting on the bike again and there was no way I was going to let Sue get on hers either.  But don’t you know it; the rest of them got on their bikes and went that last leg. My God do I love them! I started to cry watching them bike away. 

Destination: Mall of America

It was close to 3:00, I knew John had to have been in by several hours by now and was not worried about his safety. As it turns out he was in by 11:10 that morning. Way to go!

The Tittsburgh Wheeler crew was there and cheering in the riders. Sue and her sister Dolly preemptively went for the truck and drove the route in case they ran across any riders who needed help. The Sweep vans were working over time. They picked up Denise about 5 miles from the last pit stop and brought her back with them. I know that killed her to get in the truck. OK, 4 down. As the “cheerers”, we were drinking tons of water and icing ourselves down. Riders were being taken away in ambulances! 

Jim and Elle were the first riders in, 6 down. Next in were Jeff, Pam, J.R. and Mike. My team made it! It was everything I could do not to bawl my eyes out. They were there, they were safe, and they made the 110 miles in the BRUTAL heat! I was so happy to see them. 

The event went well, very professional, loads of fun and all for a good cause. A huge thank you to Kari and Bo Mitchell for their hard work and dedication through the year to prepare for this event, you did a great job! 

For those of you who have not done something like this before, you can’t imagine the commitment and sacrifice that it takes to get ready and participate. The fund raising and training are a commitment in itself, but actually completing this physical of an event, especially one taking place in such extreme heat, is both physically and emotionally draining. It has been a life changing experience for me. I am so proud of my team and honored that they sported the Tittsburgh Wheeler name. 

Thank you to everyone who participated this weekend. I am ever grateful. Last but not least, J.R., I love you.  Thank you for being by my side and making every day with you a blessing.

Next up, the 3-Day 60 mile walk for Team Tittsburgh in less than one week. (August 20, 21, 22)     Check out the site below for spectator information, cheering station locations, and come cheer on Team Tittsburgh and the other walker hero’s. Pray for cooler weather for that weekend. 

http://www.the3day.org/site/PageServer?pagename=TC_Spectator

Love to you all!

Jen

June 2010 Update

 Hi Everyone,

It’s been a few months since I’ve sent out an update so I thought I’d bring you up to speed on what’s been going on.

First, J.R. and I crossed off the number one thing on my bucket list this spring, a two week trip to Italy. It was fantastic! We went to Venice, Verona, Florence and Rome. It was a trip of a lifetime and was everything I expected it to be and more. Two of my favorite moments were these. Our first night in Venice was lightly raining. All the guide books tell you to “get lost”, so we did. After a few glasses of wine and trying to find our way back to our hotel we came across San Marco Square at about 11:30 when the orchestra was playing their last waltz. There was not a person in sight in the square, so J.R. grabbed my hand and we ran out into the middle of the square and danced and kissed in the rain to the last song. You can’t make it up! There were lots of moments like this throughout the trip.

My other favorite moment was an entire day out in wine country outside of Florence with our friends Jim and Sue Edberg. We were invited out to a farm for a “robust lunch” with an Italian family and friend of Jim and Sue’s. This place was right out of the story books. From the beautiful property to the hospitality of total strangers, every moment I had to stop myself from crying at how perfect the day way. We ate for about 3 hours (everything was homemade and from their land), drank longer, had great conversations even though everything had to be translated, and a nap. It was great! After their hospitality we drove through Chianti country and watched a true Tuscan sunset over vineyards and olive groves. Again, you can’t make it up! Truly one of my favorite days of all time.

Also while in Florence, the Edberg's joined us for a day of Tuscany cooking classes with our chef Paola.  The day included a tour of Florence, a behind the scenes look at the oldest geletaria in Florence, a tour and ingredient shopping at the Market, and of course the cooking classes.  We prepared our meal with the guidance of Paola and her mother, then enjoyed the feast on the sunny patio.  Another great day!

When we got home from Italy, J.R., Steph, Nicky, Zach and I walked in the mother’s day Race for the Cure that takes place every year at the Mall of America. The company I work for, Loffler Companies, was a sponsor for the race and organized a team this year. Thanks Jim!

 

Did I ever tell you that I have the greatest friends on the planet? I do and there isn’t even a close second! Late May a group or friends got together and planned a benefit / fundraiser for me. They had a silent auction, sold raffle tickets for a great patio set, sold jewelry and a whole host of other items to raise money for my bucket list fund and my charities. They raised over $7,000! Thank you to everyone who participated, donated and came to visit me for the event.  Especially thank you to those dear friends who planned the event.  Vickie, Bart, Eric, Kari, Bo, Pauly, Jill, Eddie, Mitch, Paula, Big Mike, Pam and many others. Forgive me if I do not include everyone, as so many did so much to make this such a fun night for me. I don’t know how I can ever repay your thoughtfulness and generosity. I am truly blessed. 

The Pink Limo added a nice touch at the Jen Event.

The Anderson Family:  Jessica is still in South Korea, but getting a long distance hug from Stephanie and is very much "in the picture" for all Anderson events! 

The second picture includes my sister Susan, Limo guy, me, my mom, Nicky and my Little Aunt Kathy all in from Pittsburgh and Maryland for a visit.

I’ve been training hard for the 3-Day walk again this year and have also signed up for The Hartford Breast Cancer Ride. Both events are in August; yes I’m crazy and wish someone would have talked me out of at least one of these events. My bike training isn’t going all that well. I need to get out more. I at least now have a helmet, black with hot pink. 

You’re probably wondering how treatment is going. Actually it’s going quite well. I have very few side effects, a little dizzy when I leave after the infusions, a chemical feeling in my nose which can cause the occasional nose bleed and some mouth sores. These I can handle. They doubled the Faslodex shot.  This is the one that shuts down estrogen and progesterone production in my body, so the hot flashes are coming on fast and furious again and I’m having trouble sleeping from 2:30 – 5:30 am. Not a big fan. Again, these I can handle.  But….all of this treatment has helped my tumor marker numbers drop 11 points. Yeah! So, what does this mean? Well, at this time, Dr. Bowers is not planning to change or add any new meds for a while, which means, so far, no hardcore chemo with all the nasty side effects, which makes me very happy. All in all, I have no complaints. My head is in the right place, and I am surrounded by people who love me. How bad can life be with all of you in it?

Recently I was given a book to read by my sister Suzanne called “Spiritual Fitness”. No diets in this book. J One of the things that made an impact on me was the section regarding attitude. I think I’ve had a pretty good attitude through this whole thing so I wondered what I could do different that I wasn’t already doing. And you know what? The one thing I haven’t done through this last set back was adjust my attitude back to the “I’m going to kick this thing in the ass and live!” mantra. Which kind of surprised me. So, I made the decision on my way home from Pittsburgh, somewhere over Wisconsin that I am going to beat this thing and live. Cancer is tough but I am going to be tougher. There, I said it out loud. Now my head is really in the right place.

Lastly, I had a little scare this week, after a training walk I had some pain under my right arm pit, where I had my lymph nodes removed, and I felt a small lump. So I called Dr. Bowers the next morning and she got me in to get an ultrasound and possible biopsy the morning after that. Good news, it’s nothing to be concerned with, it’s just some scar tissue from an earlier surgery. Yeah again!

So that’s it. I’ll keep plugging along with treatment and kicking cancers ass. I hope all is well with you all and that life is as good as you can imagine.

Love to you all and God bless!

Jen

Zometa, Faslodex and Avastin......Oh My!

Hi Everyone,

I’ve got another update for you. Many of you know some of this already so I will try to be brief. As you may remember, I had an MRI in January-it appeared to have “extensive bone metastasis in all of the vertebrae” but we were not sure if it was cancer or Zometa. On February 25th I had a PET and CT scan of my skull to mid thigh. We’re sure now, it’s definitely cancer.

We were fortunate to sit down with the radiologist, Dr. Bodeau, from LifeScan. Normally radiologists don’t sit with the patient to review the scans; they dictate a report and send it to your physician. But our dear friend Mary Rausch works at LifeScan and arranged for us to see Dr. Bodeau in person. He had my PET CT scan from July, which was clear except for L3 and L5, the MRI from January and the bone scan and bone survey results from December along with the recent PET CT scans.

The science part of a PET CT scan is very cool stuff. Now I know why these things cost an arm and a leg. Dr. Bodeau was very thorough in his explanation and what we were looking at. This just in, eye balls look really funny on a PET scan. On one view I was upright and spinning around, on another view we were looking at me from the top of my head and down through my body, pancreases look funny too. Then another view we were looking at me from the side, it was fascinating. I should have been a radiologist.

Here is the good news. There is no cancer in my soft tissues. Lungs, liver, spleen, adrenal glands etc. all appear normal. Those of you who gave me crap about smoking all those years, apparently I have beautiful lungs. Yes I do. You could see a faint Barcardi bat logo on my liver though. Other than that, it’s in perfect working order. I’m so pleased.

Here is the bad news. I have cancer on every bone in my body. “The skeleton demonstrates innumerable tiny sclerotic lesions throughout the visualized bones. These show intermediate to high metastatic activity which corresponds to the findings noted in the MRI scan - extensive bony metastasis.”

We focused on the spine during the meeting but I asked Dr. Bodeau if it was everywhere and he said yes. Every bone he checked looked exactly the same. Ribs, pelvis, spine, shoulders, everything.

We had a week to absorb the news from the scans before we could sit down with Dr. Bowers which was good for me because I wasn’t a mess when we met with her. She was at a breast cancer conference last week. We saw her yesterday afternoon.

So, what do we do about it all this?   In addition to the Zometa and Faslodex that I am receiving once a month, I will start a drug called Avastin. I will get this 2 times a month administered via IV. It will take about 90 minutes to infuse and has very minor side effects. High blood pressure (not worried about this, believe it or not my BP was 90 over 50 yesterday) and increased protein in the urine (hard on the kidneys).

Why? What is all of this going to do for me? Well the Zometa will keep my bones strong. I need this because as the cancer progresses it will make the bones weak. If they get weak enough they will collapse and cause paralysis. Sounds fantastic doesn’t it? My bones would be like looking at a piece of Swiss cheese. So we need the Zometa to keep doing its thing.

I receive the Faslodex to suppress the estrogen and progesterone production in my body. My type of cancer is estrogen and progesterone receptor positive so we stop the production to cut off the cancers food supply. I’ve been taking this one for 3 months now. This is the 2 minute injection in the butt I told you about. If you see me scratching myself, it’s the medication in the muscle, it makes me very itchy, but only on the left side. I don’t get it either.

And now I will add Avastin to the mix. What Avastin is designed to do is “bind to VEGF (vascular endothelial growth factor) which has been shown to be a key mediator of tumor angiogenesis”. What that means is that each tumor has its own little vascular system and the Avastin is supposed to restrict the vessels so the tumor dies off. Typically Avastin is given with chemo but since it takes 3 months to do its thing, we’re going to hold off on chemo and see if the hormone therapy and Avastin will do what chemo could do first.

Trust me on this one; I am not broken hearted to hear that we’re going to hold off on chemo. As a matter of fact, if no one ever mentions chemo to me ever again, I’ll be OK with that.

I’m sure your next question is “How are we doing?” Actually, we’re doing OK. Some days are better than others as you can imagine but in the grand scheme of things we are doing alright. The crazy thing is that I feel fine. I have some pain but it’s not unbearable. If no one told me that I had cancer I’d just think the degenerative discs in my back were getting worse and arthritis was finally setting in from the zillion car accidents I’ve been in.

I will be heading out to Aspen to ski with my Dad and Roseann this weekend and JR and I are looking forward to our trip to Italy next month with our friends Jim and Sue Edberg. I will step up my efforts to check things off from my bucket list too. I’ve got to get the real physical things crossed off sooner than later because I just don’t know how long I will feel good. I will still be training for the breast cancer 3-Day walk and The Hartford Breast Cancer Bike Ride here in Minneapolis this summer. My hope is that I will still feel good in August and be able to fully participate in these events. Dr. Bowers said the more active I am the better it will be for me.

If anyone wants to come visit us or go somewhere cool, we’re in! I’m going to spend what’s left of my life a lot like I have the first 43 years of it. Having a really good time. And for those of you who keep sending me these crazy diets and such, cut it out. As much fun as the “marijuana oil supplement” sounds, I’m not going to do it. I know it’s meant with good intentions, but this is not the time of my life to become a vegetarian or to cut out the cocktails. Send me the “eat whatever you want and drink till your heart’s content” diet please. That one sounds really great. : )

I hope this note finds you all well today. Thank you for listening to my update and for the many thoughts and prayers you send my way. I appreciate it very much. My life is better because you all are in it. Thank you for that.

Love to you all,

Jen